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Table 2 Overview of themes and sub themes with exemplar quotes

From: Integrated health Services for Children: a qualitative study of family perspectives



Illustrative quotes

The Nurse Understands Our World

Initial Distrust of Intrusion

“Well at first, I was a bit unsure, just wondering whether she was here to judge, or you know, even tell you off. It was just a bit unusual to have someone come in and ask all about your actual home and life.” (Caregiver 16; Constipation)

“[Nurse] was very full-on and very in your face after the first meeting … very personal stuff, it was like, whoa, slow down! You’re here for her asthma and we need to trust you before anything more, it’s all a bit quick and intrusive.” (Caregiver 19; Asthma)

“It felt a bit, I wouldn’t say uncomfortable but more interesting … why am I talking to [Nurse] … about my daily life or something, instead of talking about my asthma.” (Child 34; Asthma)

Time Facilitates Personal Disclosures

It always felt like a conversation … [Nurse] made it so relaxed, she took time to hear what we was going through and that let us open up more than I have with any other medical person.” (Caregiver 3; Eczema)

It just felt much calmer and natural and easy, and [Nurse] was so lovely so friendly. She had all the time that we needed, she was in no hurry at all, she was really interested in us. She got to know us personally, bit by bit.” (Caregiver 16; Constipation)

In hospitals you can’t really trust anyone because they’re all strangers, but I knew when I first come here that everyone here’s a stranger to me but once I had like one or two sessions with everyone here it’s like I felt like I can trust them all.” (Child 32; Constipation)

Feeling Heard and Receiving Contextualized Support

“[Nurse’s] are the only two that have not lectured me about my Dad smoking. So when you go to the hospital they tend to sort of look at you and kind of go, oh well you know, you need to, you need to nag your dad and I’m like but it’s his house, I can’t, I’m living in his space, unfortunately I can’t change that. But [Nurse’s] listen … they try and work around it, or work with it.” (Caregiver 19; Asthma)

It was nice of [Nurse] to come here and talk to me and [Child], especially [Child] and to actually see him understand, hear him out.” (Caregiver 22; Eczema)

Material Resources that Flow (or not) from Being Heard

“When those vouchers come every month it helps, without those we can’t eat the veg … I don’t think I could have got that on my own … the [service] is fantastic in that sense” (Caregiver 7; Constipation)

I’m suffering with mold, can you help me out, and she said, yeah, just go to this website, and you can call them... I did end up calling them.” (Caregiver 9; Eczema)

“[Nurse] did get us the bed alarm, so it alerts us if there’s a bedtime seizure.” (Caregiver 37; Epilepsy)

Professionals Involve Us in Treatment

Importance of Relationships with Key Professional who Coordinates Care

This scheme has been much more two-way, it’s been amazing, you know, I’ve always been able to contact [Nurse], she has checked in with me to see how things are, and that makes such a big difference.” (Caregiver 33; Eczema)

“[Nurse] is always there, on the phone or the email, it’s more like a grandma. Someone to say “Oh I’m worrying about this”, and she sets us on the right path, she knows what we need.” (Caregiver 35; Asthma)

Respect for Young Person’s Autonomy

The way they do it is to get her to understand, they do it in the kiddie way, which is great because now she’s more interested, she wants to listen, she wants to know what’s going on.” (Caregiver 19; Asthma)

I know the plans, because mummy and [Nurse] taught me them, and I can just do it now. I might not like doing it all the time, but I can, and it makes me feel normal, and I’m like the one, you know, doing it.” (Child 24; Eczema and Asthma)

Trust is Built on the Recognition of Professional Learning and Enhanced Through Physical Presence

“[The Nurse] is continually learning … she was telling me about talks she’d been to, she’d ring me and say ‘you know, this book might be interesting for [Child]’. And that kind of reassured me that she knew her stuff.” (Caregiver 16; Constipation)

Because [Nurse] knows us well, he quickly texted me back telling what I needed … it’s a quick text message now because he’s seen our story.” (Caregiver 16; Asthma)

“[Nurse] knows me now and I’m not got so many questions. So we can just text now if I need to ask her about something.” (Child 33; Epilepsy)

It’s much more organic, I feel much more relaxed, you’re more prepared to question things rather than just accept … I think, because someone has put themselves physically out there for you it’s noticeable.” (Caregiver 33; Epilepsy)

Negotiating Point of Independence

“We don’t want to lose the service but obviously you can’t have everyone staying on it forever, I don’t know if it would be possible just to sort of ease it down over the time, so it was more like, it’s still there if you need it.” (Caregiver 2; Eczema)

She’s obviously given me the choice whether I want to keep her on or not, but as I said she’s been fine, I know what I’m doing with her.” (Caregiver 10; Constipation)

“I said, “Don’t leave us”, I said, because the four seasons, that’s when her asthma plays up and once we’re on our own we’re off to the doctor or off to the A&E, so I said, “Don’t …, you know, “Stay, because then you can help.” (Caregiver 36; Asthma)

Professionals Support All Our Needs

Looking After the Whole Person

“[the Nurse is] even asking like about behaviour, how is his behaviour, how is his sleep pattern, so it was kind of that general getting a picture of [Child].” (Caregiver 17; Constipation)

It’s been really amazing, from where I was when my anxiety was bad, my asthma was bad, and then having them to help me through it was really, really helpful.” (Child 34; Asthma)

Importance of a Multidisciplinary Team Beyond the Key Professional

“[Nurse] goes well I’ll try and get him assessed by [Mental Health] and I’m thinking to myself, don’t waste your time love … it came so quick and easy … I’m thinking wow these people really, they have what they need in place to help.” (Caregiver 15; Asthma)

“[Child] explained to [Nurse] how, what he was going through, you know, something he took on board and then [Nurse] went back and spoke to the pharmacist and discussed other alternatives.” (Caregiver 27; Asthma)

“And what helped her most is that [Nurse] work alongside [Mental Health Team], so she was aware of the problems that [Child] was having, which was quite helpful.” (Caregiver 32; Constipation)

Preference for Conventional Carea

I think the service is great as a whole, the only thing I would say would be the whole mental health side of things. You know, I think if someone says no, we’re great but thank you for your support, I think that should be enough and I think the focus should be on the child at hand.” (Caregiver 19; Asthma)

A System that is Glued Together

Connecting Services Together

“[Nurse] tried to help us navigate the systems to find something, so she got in touch with our social worker and said, ‘look, these people have been abandoned and they need help, we need to try and get them help’ so she helped us and sort of nagged our social worker to access the Adoption Support Fund” (Caregiver 30; Constipation)

Another real great use has been like linking up with other services, so we’ve been linking up with the allergy people at St Thomas’ and also the dermatology department and the GP and just linking it all together.” (Caregiver 2; Eczema)

It’s like in my social work days, it’s like joined up thinking between different agencies was always important and I think now, to join up that conversation with the school and other people, you know, you see the sense in it.” (Caregiver 33; Epilepsy)

Importance of Formal and Informal Contacts

[GP] must see the records from the [Nurse] because then I ring saying, “Oh [Nurse has] recommended prescribing Eumovate” and they say, “Oh yeah, we see that” and then they’ll just do it.” (Caregiver 2; Eczema)

“[Nurse said] don’t worry, leave it with me, I will deal directly with them and I will put it on to the system, and then it was on the system, he got the prescription on the system. Easy.” (Caregiver 15; Asthma)

Communication in the Context of Uncertaintya

“The communication between you guys … and the GPs probably need to be strengthened, but it’s more from the GP’s side if that makes sense. [the Nurse] would suggest all these things but the GP says no. So we’re stuck again.” (Caregiver 3; Eczema)

Supporting All Sectors to Take on a Meaningful Role in Child Health

“A few times she’s wanted to go [to the toilet] and the teachers have told her no. Where now, where [Nurse] got in contact, a medical professional, they’re listening so if she needs to go, she’s allowed to go now.” (Caregiver 32; Constipation)

“[Nurse] was busy chasing up [CYP]’s school to speak to the school the nurse … so, school nurse went to [CYP]’s school and cleared out the cupboards, because certain things just wasn’t supposed to be there.” (Caregiver 36; Asthma)

“I had to talk to the police for some stuff and she helped me work through that. And I think she may have told them about my epilepsy because they seemed to know. Yeh, at first, they thought I was faking when I was ill!” (Child 37; Epilepsy)

Challenges of Working Alongside a Stretched Workforce

“[Nurse] was getting frustrated I believe [with GP]. I don’t want to speak for her because a lot of the things that she would suggest, she was like, “Has that been done yet?” “No.” “Okay, I’ll have to send another,” “Has that been done yet?” “No.” (Caregiver 3; Eczema)

“[Nurse] and [Mental Health Nurse] both of them have constantly called the school, they’ve tried liaise, sometimes they can’t get through, sometimes they leave messages, the teachers don’t get back.” (Caregiver 32; Constipation)

“We normally see [Nurse] in our GP but they, like she messages them asking for a room and they don’t reply, so that’s why we can’t really see her as much as we often did.” (Child 32; Constipation)

  1. aThese subthemes represent discrepant or few cases that aided in the interpretation of analysis